Category: Endo Belly

I appreciate the compliment. Whether it’s makeup, what I wear, or how I speak, I put in a lot of effort in how I present myself every day.

It’s takes a lot of work to put on a smile, especially when my back feels like it’s going to collapse in on itself or my uterus keeps trying to claw its way out of my vag.

And pretending happens anywhere I go. At home, work, with friends and family and at events throughout the year. Endometriosis sucks the life out of me; I have to act like a “normal person” everywhere I go just to have a semi-decent life. It’s exhausting.

Having an invisible illness means that for the most part people look at me and just assume I have it all together. That because I got that surgery awhile back and took “took those seven weeks off” for recovery, so I must be cured.

They don’t see the eight pills I take every morning just to function. Yes, eight pills. Then all the of the pain medication that I may take throughout the day. Plus the alternative ways I may choose to treat myself: heating pad, ice pack, ginger tea, various types of oils, turmeric pills… the list goes on.

To top that off, endo warriors, myself included, have a plethora of bowel and urinary frustrations, so we might go the bathroom more than 20 times a day (or more).

I’m four months out from my surgery and all I’m thinking about is whether I feel better or worse. I’m always tired. My back hurts. I just had an X-ray, Fortunately, nothing scary popped showed up but my doctor wants me to continue my PT sessions for awhile.

I’m also getting an MRI soon to check my nerves. I’m exhausted.

You can see it in my face, when I don’t have on makeup. I’m carrying around a lot of stress, but I’m learning ways to cope. The nausea is ongoing, ever present and never subsides. I hardly eat.

Having the Mirena inserted was like having a tiny troll with a sword stab my uterus repetitively then take his small fist and grab some uterine lining and pinch it with all his might multiple times.

I cried.

The four 200-mg Advil pills I took just 15 minutes prior to the procedure did nothing to shield the pain.

Imagine one of the worst kind of cramps in the center of your pelvis. It’s warm, dull and achey and it makes you nauseous. Add some sharp pangs and a doctor asking you to relax every 2 seconds –that’s the Mirena insertion.

I thought they’d numb me. They should have. Heck I should have gotten an epidural.

The Mirena is for my adenomyosis. The next option is to remove my uterus altogether. Doctor says that’s the best option if there are no kids in the works.

I am one in 10. Being a woman with endometriosis means I am always in pain. It means I push past the pain and go to work anyways. It means sitting at an office when I really just want to curl up into fetal position. It means smiling when I’m actually gritting my teeth. It means laughing when I want to cry. It means telling my partner, “No” when I really want to say, “Yes.” It’s saying, “I’m fine” when I actually mean, “Take me to the ER again.” It’s people telling me that I’m lazy or that I’m not dedicated. It’s knowing I can’t eat that pizza, that hamburger, that steak or drink that cocktail for fear I’ll have even worse pain. It’s looking like I’m five months pregnant when I can’t even conceive. It’s walking when I want to run. It’s doing the scaled versions of some workouts when I wish I could do the intense ones. It’s pretending I’m OK when I’m at a party/event that I forced myself to go to in the first place. It’s getting surgery after surgery to “fix it” but no relief. It means people will see nothing looks wrong with me and think I’m a liar. It’s caring what they think when I know I shouldn’t. It means finding the strength I didn’t know I had. It means finding new ways to enjoy life I hadn’t thought about. It’s being happy in spite of the pain or the devastating news I’ve received from my doctor. Being a woman with endometriosis is knowing I will get through all of this even when I’ve had days where I wanted to quit. 🎗🎗

I’ve just had a single excision endometriosis resection surgery, where Dr. Guan said he cut away so many implants that were hiding underneath my uterus. He lifted and moved my swollen uterus and cut below it. Thankfully, I did not have any adhesions around my ovaries or on my fallopian tubes.

He and Dr. Bardawell were able to cut away implants near my bowels. Apparently, my uterus is swollen and shaped like a football – enlarged and filled with endometrial-like tissue that is impossible to reach. To get at it, Dr. Guan said the next step would be a total vaginal hysterectomy.

I’m just not there yet.

A few expectations I had about this surgery: It’s meant to be the near end-all of the endo pain and symptoms I’ve been suffering from over the years. It’s meant to alleviate most of my symptoms, including painful intercourse, nausea, excessive bleeding, lower back pain and abdominal pain. It was a single incision, meaning the scarring is straight through my belly button – only one hole.

Here is the reality I’m facing so far: My stomach now looks like I am eight weeks pregnant. My belly button looks awful with scarring and purple bruises all around it. I feel bloated. I’m nauseated. Peeing is hard. Walking is hard. I haven’t had a bowel movement. I’m irritable and the pain meds are not entirely working. Food tastes awful. I have no appetite. I’m dizzy from all the meds. My clothes, especially my pants, don’t fit. I’m tired.

I’m hoping these symptoms go away quickly. That by the middle of next week, I’m feeling more like myself. I currently want to vomit.

Endo sucks. This surgery sucks.

The only good that has come from this is the outpouring of support from my friends, fiancé and family. The love is great and makes me feel like I can keep pushing on.

I can’t wait until I am back on my feet, working out, eating right and feeling good.

Let me know if you have any questions about this. I am still finding ways to cope with the pain and sadness, so it’s a daily struggle. I know that I will find something that works for me soon.

So my day surgery turned into an overnight stay at the hospital due to severe pain, the inability to use some of my bodily functions and the nausea.

Dr. Guan and a female fellow surgeon (I can’t remember her name) handled me with precision. My surgery was scheduled for 7:30 a.m., but I didn’t actually make it into the OR until after 8. And I don’t even remember that part because as soon I signed the anesthesia consent form, it was lights out for me❗️

The doctors worked for at least three hours during the Da Vinci single incision endometriosis surgery, cutting away endometriosis implants around my uterus, ovaries and bowels. My uterus itself was twice the size it should have been, according to Guan.

Apparently, I had quite a bit of endometrial-like tissue inside my uterus that caused the swelling, and they were unable to get it out. They assured us (fiance & sister) it would only cause problems during my period and that I’d no longer experience the horrific pain I experienced every day as a result of my endo.

I remember waking up in the recovery area with my cheerful, sweet (and handsome) nurse Tom, who I eventually nicknamed Tom Cruise.

After several doses of morphine, which did absolutely nothing for me, Tom got approval to use a fentanyl pain injection, another narcotic that did nada. I had experience with both, as I had used them for my first excision surgery and for my appendectomy last year. The pain did not subside. At this point my pain was bouncing around between a 7 and an 8 or between ☹️and a 😫.

Then Tom – God bless him – got me dilaudid (hydromorphone) and sure enough my pain eased up. I started cracking jokes about how I was feeling so little pain, I’d make it to my Olympic weightlifting class in the morning and snatch and deadlift a few hundred pounds here and there.
But by 5 p.m. shortly after they brought me back to the day surgery area, the pain came back with a vengeance and Tom was no longer my nurse. I couldn’t pee and my anxiety skyrocketed. My nurse gave me an anti-anxiety but no painkillers.

I started to cry. Did she not believe me?

That couldn’t have been it, because they asked me to stay the night to get the pain under control, which I wasn’t originally meant to do. Then came the Toradol, an anti-inflammatory med intended to treat pain. My pain went from 😫 to 😖. Not much relief there and I told her that, but she said that because I had taken an anti-anxiety pill, I couldn’t take a narcotic. 🤷🏽‍♀️

After they admitted me into the hospital, my new nurse JR tried to get approval for something stronger. We tried morphine. Again nothing.

By 7:30 p.m., I was in tears practically screaming in agony. Eventually, JR got approval for several painkillers, including dilaudid, from the fellow surgeon who also said she’d stop by in the morning to check in on me. That was definitely good to hear; I liked her.

I’ve been drinking so much apple juice, ginger ale and water. I don’t understand how I haven’t yet exploded because going to the bathroom is nearly impossible. It’s a task, it hurts and barely any liquid comes out of my body.

“That’s normal,” Nurse JR said. “Your body is still coming off the anesthesia and you had surgery on those delicate areas. Try not to push yourself.”

That’s easy, I thought to myself. Trying to pee is uncomfortable, so I’d rather not do it even if the urge is there.

About an hour ago (it’s about 5:30 a.m.), JR gave me more dilaudid after my pain shot up from a 😏 to a 😩.

He’s coming back in awhile to give me more Toradol and liquid Tylenol. Then the Oxy, which surprisingly and unfortunately does little for me.

Needless to say, working on pain management has been an unfortunate chore, one I haven’t been able to get right.

I asked JR if I’d be able to sleep in my own bed tonight. He said it all depended on how well I managed pain on pills like Oxy. It’s disheartening because I don’t know what to do. Why isn’t my body receptive to these crazy drugs? I wish the morphine would take care of everything.

Tomorrow is the big day. I’ll be out of surgery by this time tomorrow (hopefully).

I’m sitting here on my lunch break, trying to calm myself. Telling myself over and over that it’s an outpatient procedure, so I shouldn’t be this nervous. It’s a common procedure, a blip on a doctor’s schedule. Next!

I talked to Danny last night and said that he needed to make sure that under no circumstance is he allowed to give in to my certain incessant future pleas for fast food following the surgery. No cheeseburgers. No pizza. No chocolate cake. No comfort food to ease the pain.

I’m hopeful the anesthesia will make me nauseated enough to ignore any possible cravings I’ll experience. For now, the anxiety I feel is enough to curb my appetite.

I took half an Ativan. Where’s the other half?

It’ll be OK. Tomorrow will come and go and by next week, I’ll be so thankful I chose to undergo this endometriosis excision surgery. All I can do now is be patient, calm and hopeful.

This is the second surgery I’ve had for endometriosis, but it doesn’t lessen the anxiety that has begun to manifest itself in different ways throughout my body.

I’m eating more again. I don’t want to get up. I have racing thoughts. Can’t focus. My body feels weak, fatigue spreading through my once proud and strong arms. Everything is blurry.

I know these symptoms all too well. They dominated my life in 2017. But I persevered. Stuck it out.

After my last surgery in 2016, I couldn’t walk for a week. I thought –foolishly—that I’d be up and out the door, back to work in two days at the most. The pain that followed that surgery was worse than before. I called the doctor multiple times. Ultrasound, vaginal ultrasound, physical vaginal inspection, another ultrasound, pee in a cup.

“There’s nothing we can do.”

The pain on my left side, where my ovary would be, was unlike any pain I’d ever felt. I asked for my painkillers, but I used them sparingly.

The surgery was supposed to help, but it just intensified what I was already experiencing. I later learned that cauterizing the endo implants only created scar tissue that could created more problems in the body.

That was nearly two years ago.

For my second surgery, I am hoping that he cuts away most – if not all—the endo implants that have taken over my uterus, ovaries and bowels.

Little research exists on endometriosis when compared to other chronic illnesses.

For a disease that affects 1 in 10 women, that fact is disheartening. Especially for sufferers like myself.

While I experience the more common of the symptoms, including pelvic pain, I also experience a symptom that not many people may recognize: Endo Belly.

Within 24 hours, I can go from having a relatively flat belly to an inflated, pregnant-looking stomach.

It hurts. It’s embarrassing and it’s difficult to talk about when you don’t understand it yourself.

Just last week, I experienced horrible endo belly symptoms.

On New Year’s Eve, the dress I wore on Christmas didn’t fit me when I wanted to leave my home to ring in the new year. I felt bloated, fat and ugly. Only my $5 Hanes gray, oversized sweatpants were comfortable enough to wear. I didn’t go out.

But I couldn’t wear sweats to work, so I wore loose-fitting tights and an oversized shirt to cover my abdomen. I felt disgusting.

Lately, the symptom has been happening a lot more.

I am monitoring my food intake, but this last flare up happened right as I re-upped my birth control (Hormonal changes are another huge stressor I deal with on a daily basis).

Recently, I decided to go back to eating my weekly prepared meals of chicken, rice and some sort of vegetable with nuts or avocado on the side. It helps keep me healthy and lessens the affects of endo belly.

As I get closer and closer to my surgery scheduled for Feb. 1, I am hoping that I can maintain good eating habits, so that any nausea or other symptoms associated with the surgery don’t get in the way.